Uncertainty and anxiety in the Cancer of Unknown Primary patient journey:a multi-perspective qualitative study

Richardson, A1, Wagland, R2, Foster, R3, Symons, J4, Davis, C5, Boyland, L6, Foster, C7, Addington-Hall, J8

1. Clinical Professor of Cancer Nursing and End of Life Care, University of Southampton & University Hospital Southampton NHS Foundation Trust, Faculty of Health Science, Southampton General Hospital, Tremona Road, Southampton, SO16 6YD, United Kingdom

2. Senior Research Fellow, University of Southampton, Faculty of Health Sciences, Highfield, Southampton, S017 1BJ, United Kingdom

3. Research Fellow, University of Southampton, Faculty of Health Sciences, Highfield, Southampton, S017 1BJ, United Kingdom

4. Director, Cancer of Unknown Primary Foundation, The Follies, Brightwalton, Newbury, RG20 7BZ, United Kingdom

5. Consultant in Palliative Medicine, University Hospital Southampton NHS Foundation Trust, Southampton General Hospital, Tremona Road, Southampton, SO16 6YD, United Kingdom

6. Consultant in Palliative Medicine, Oakhaven Hospice Trust, Lower Pennington Lane, Lymington, Hampshire, SO41 8ZZ, United Kingdom

7. Reader in Health Psychology, University of Southampton, Faculty of Health Sciences, Highfield, Southampton, S017 1BJ, United Kingdom

8. Professor of End of Life Care, University of Southampton, Faculty of Health Sciences, Highfield, Southampton, S017 1BJ, United Kingdom

Correspondence author:

Professor Alison Richardson, Clinical Professor of Cancer Nursing and End of Life Care, University of Southampton & University Hospital Southampton NHS Foundation Trust

Alison.richardson@soton.ac.uk

Tel: 00 44 (0)23 8079 8494

Fax: 00 44 (0)23 8079 6922

Key words: cancer of unknown primary, qualitative, uncertainty, continuity

Word count

Abstract: 250

Main manuscript: 3498

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Acknowledgements

We are grateful to our clinical colleagues at University Hospital Southampton NHS

Foundation Trust, Portsmouth Hospitals NHS Trust, Isle of Wight NHS Primary Care

Trust and the Hampshire and Isle of Wight Comprehensive Local Research Network

who helped with identification and recruitment of participants. We thank members of

our project advisory group Dr Wheater, Ms Howard-Jones, and Professor Hopkinson

and finally Ms Hughes who contributed to the analysis.

Study approval

Ethical approval was obtained from Southampton and South West Hants Local

Research Ethics Committee (B) and the Research Ethics Committee of Faculty of

Health Sciences. Governance approval was obtained from three NHS Trusts in

Central South Coast region: Southampton University Hospital NHS Trust

(CAN0679); Portsmouth Hospital NHS Trust (PHT/2011/60), and the Isle of Wight

NHS PCT (CSP:26904). Informed written consent was obtained from all patients at

the beginning of the study. Informal and professional carers identified by the patient

were asked independently for their consent to participate.

Funding statement

Supported by Dimbleby Cancer Care

Competing interests

None declared.

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Licence for Publication

The Corresponding Author has the right to grant on behalf of all authors and does

grant on behalf of all authors, an exclusive licence (or non-exclusive for government

employees) on a worldwide basis to the BMJ Publishing Group Ltd to permit this

article (if accepted) to be published in BMJ Supportive and Palliative Care and any

other BMJPGL products and sublicences such use and exploit all subsidiary rights,

as set out in our licence (http://group.bmj.com/products/journals/instructions-for-

authors/licence-forms).

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Abstract

Background: Patients with cancer of unknown primary (CUP) have metastatic

malignant disease without an identifiable primary site, it is the fourth most common

cause of cancer death.

Objectives: To explore patients’, informal and professional carers’ experiences of

CUP to inform development of evidence-based, patient-centred care.

Methods: Qualitative study involving development of multiple exploratory case

studies, each comprising a patient and nominated informal and professional carers,

with contextual data extracted from medical records.

Results: 17 CUP patients, 14 informal and 13 professional carers participated in the

study. Two inter-related themes distinct to CUP emerged: uncertainty and continuity

of care. In the absence of a primary diagnosis patients and informal carers

experienced uncertainty regarding prognosis, possible recurrence and the primary’s

hereditary potential. Professional carers experienced difficulty communicating

uncertainty to patients, ambiguity in deciding optimal treatment plans in the absence

of trial data and a test or treat dilemma: when to discontinue seeking the primary and

start treatment. Common problems with care continuity were amplified for CUP

patients, relating to coordination, accountability and timeliness of care. The remit of

multidisciplinary teams (MDTs) often excluded CUP, leading to ‘MDT tennis’ where

patients were ‘bounced’ between MDTs.

Conclusions: The experience of those with CUP is distinctive and it can serve to

amplify some of the issues encountered by people with cancer. The clinical

uncertainties related to CUP compound existing shortcomings in continuity of care,

increasing the likelihood of a disrupted patient journey. However, while little can be

4

done to overcome uncertainty, more could be done to address issues regarding

continuity of care.

Glossary of acronyms

CNS: Clinical Nurse Specialist

CUP: Cancer of Unknown Primary

ESMO: European Society for Medical Oncology

MDT: Multi-disciplinary Team

NICE: National Institute for Health and Clinical Excellence

INTRODUCTION

Patients with Cancer of Unknown Primary (CUP) have metastatic malignant disease

without an identifiable primary site. The type of tumour, extent of spread and

treatment outcome varies widely, but most appear to derive from epithelial cells

where identification of the primary is critical to treatment choice. It is often viewed as

a diagnosis of exclusion as the condition cannot be determined by examination and

testing.1

CUP is the fourth most common cause of cancer death,2 and incidence varies from

7-12 cases per 100,000 population in the USA, 18-19 cases in Australia and 5.3-6.7

cases in Europe,3 with over 10,000 cases per annum in England and Wales.2 CUP

accounts for approximately 3-5% of all new cancer diagnoses and prognosis is

generally poor.3 Life expectancy statistics vary but one meta-analysis indicated a

median survival of 4.5 months, with 1-year survival rate of 20% and 5-year survival

rate of 4.7%.4

Coping with CUP can be particularly challenging for patients and carers due to

diagnostic uncertainty, difficulty understanding the condition , making sense of

5

different tests used during the investigative process,5 and uncertainty about

clinicians’ ability to treat them.6 Consequently, CUP has been described as ‘a

devastating and bewildering diagnosis for the patient and family’.7

Care professionals looking after those with such a poorly understood condition

similarly face unique challenges. Uncertainty exists over which and how many

diagnostic tests to perform, and there is no consensus on reference points to inform

prognostication and optimal treatment.2,8 There are also a lack of arrangements to

identify and manage patients during the initial phase, and shortcomings within care

and support.2,8 CUP patients often present late with ill-defined symptoms and

investigation is frequently a lengthy, iterative process with no defined end point.

Clinicians are sometimes over-focussed on ‘chasing the primary’,9 with patients

sometimes receiving excessive investigations that are inappropriate.1 The National

Institute for Health and Clinical Excellence (NICE) and the European Society for

Medical Oncology (ESMO) have both published clinical guidelines, 2,10 which identify

significant potential for improving the patient pathway. Healthcare providers are

currently considering service developments in response to them.

To date only one ‘patient experience’ exploratory study has been undertaken with a

CUP population,6 hence little evidence exists to help providers shape and develop

services. Nor is there research to help care professionals better understand the

experiences of people affected by CUP or the challenges clinicians encounter when

diagnosing and treating this condition. To inform the debate we undertook an in-

depth inquiry seeking to explore experiences of patients, informal and professional

carers to improve understanding of the needs of those affected by CUP.

METHODS

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Case study research seeks to understand complex contemporary phenomena in a

‘real-life context’,11 and involves gathering and synthesising information from several

sources to produce generalizable findings. An exploratory design was adopted,

involving multiple cases, each case comprising a patient, and nominated informal

and professional carers. Participants were interviewed and data extracted from

hospital records to examine aspects of the patients’ diagnostic and treatment

pathway.

Patient recruitment

A convenience sampling approach was taken. Hospital-based oncology and hospital-

and hospice-based specialist palliative care clinicians in Southampton, Portsmouth

and the Isle of Wight identified patients with suspected or confirmed diagnosis of

CUP, or where no primary had been identified, who were anticipated to live beyond

one month. Clinicians ascertained whether patients were willing to be contacted by a

researcher, who then contacted them to explain the study and arrange a meeting.

Patients too physically or psychologically compromised to make an informed

decision to participate were excluded. The CUP Foundation assisted recruitment by

informing visitors to their website about the study and inviting participation. Of 29

patients introduced to the study, four did not wish to take part, five deteriorated

quickly and became too ill to proceed, two died and the primary of another was

identified.

Recruitment of ‘cases’

At the point of recruitment patients nominated for interview an informal carer (i.e. a

family member or friend), and up to two key professional carers they regarded as

important to their care, thereby creating the ‘interview set’ that made up the case. A

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sample of between 15-20 cases was sought to generate sufficient data to achieve a

robust cross-case analysis. Informed written consent was obtained from all

participants and reviewed verbally at the start of each interview, and separate

consent gained to access patients’ medical records.

Data generation

Interviews were conducted by a researcher (RF), with 7 years’ interviewing

experience. Interviews were participant-led, though informed by a script that had

been discussed within the team, including one ex-informal carer (JS). RF

emphasised that she wished only to understand participants’ experiences and had

no influence over treatment received. Interviews took place at a location of the

participant’s choice (such as their home or workplace) or over the telephone, and

sometimes patients were interviewed together with their informal carers.

Issues covered included the experience of being investigated, diagnosed and treated

for CUP, what patients understood by the term CUP, their main concerns and

support needs. Interviews lasted between 30-90 minutes and were digitally recorded

with consent. Field notes were recorded after each interview.

Professional carers were interviewed about their familiarity with the NICE Guidelines,

their experience of caring for the specified patient(s), what they thought patients

understood about their disease, its investigation and treatment, and information and

support needs. Beyond the individual cases, professional carers were asked to

reflect on their experiences generally of caring for this group and particular

challenges encountered in their interaction with families affected by CUP.

8

An audit of each patient’s medical notes was undertaken where possible to provide

context to the interviews, including route of diagnosis, presenting symptoms, site of

metastases, potential primary site, prescribed investigations and treatments and time

intervals between these.

Data analysis

Analysis progressed through four different levels: firstly, specific interviews;

secondly, individual cases; thirdly, the pattern of findings across multiple cases; and

finally, a Study Advisory Group reviewed evolving study themes in light of their areas

of expertise, knowledge of the literature and experience.11 Interviews were

transcribed, coded separately and then analysed a) as integrated ‘patient/informal

carer/professional carer’ interview sets and b) as integrated ‘patient’ sets, ‘informal

carer’ sets and ‘professional carer’ sets. Initially, transcripts were coded and

analysed thematically by two researchers (RF and RW) in discussion with all other

members of the research team (see Table 1 for initial coding structure).

A framework based on emerging themes, interview guides and the aims of the study

was developed, drawing on methods used in Framework Analysis.12 As analysis

progressed new, overarching themes were identified, such as ‘uncertainty’ and

‘continuity of care’, and the framework refined. Over time, no significant new themes

emerged from case studies, indicating thematic saturation.13 The framework was

used to index the interview transcripts associated with each case and a chart

summarising, for each interview set, what was said for each of the themes created.

The framework and its application were frequently discussed within the research

team to aid data synthesis and interpretation. Individual case descriptions were

developed to profile an individual patient’s experience and describe the case in

9

context with a chronology of events incorporating information from both interviews

and medical records. Finally, categorical aggregation identified patterns and

relationships between themes across the cases and determined similarities and

differences.

RESULTS

The characteristics of the 17 patients, 14 informal carers and 13 professional carers

who participated in the study are given in Table 2. Annotations identity case study

interviewees when direct quotes are used. Patients are identified by a consecutive

study number with an alphabetical letter indicating the NHS organisation from which

they were recruited. Informal and professional carer interviews are indicated with

reference to the patient.

Patients presented with various symptoms and received a range of treatments. At

interview, time since diagnosis ranged from three months to six years, and while

some patients had completed treatment and were living a near normal life, others

were very unwell and three died during the study. No ‘typical’ patient journey was

identified, characterised by a predictable set of events shared in common with other

CUP patients. However, the different perspectives of patients, informal and

professional carers supported two overriding themes within the data that influenced

the experience of CUP during the diagnostic and treatment journey: uncertainty

associated with a diagnosis of CUP; and continuity of care.

Uncertainty

Although a general feature of the cancer experience, uncertainty was magnified with

CUP and impacted upon each of the three participant groups. Most patients and

informal carers had never heard of CUP and were surprised to learn that despite

10

specialist doctors and modern technology (nowadays, ‘they can zoom in and split the

atom’ (A3 Son)), a primary could not be found. The unfamiliar and inconclusive

diagnosis (‘a lot of ‘Don’t knows’, ‘Can’t tell you.’ (C1 Husband) left patients and

carers feeling ‘frustrated with the doctors’ (A2 Friend) and sometimes believing they

‘had not been properly diagnosed’ (B4 Daughter). However, not all patients and

carers viewed the uncertainty of a CUP diagnosis negatively, with a minority taking

comfort that the primary could not be found, was ‘in an early stage’ (A2), was ‘small’

or might have ‘disappeared’ or ‘been ejected’ (D1). For others with advanced

disease, concerns about deteriorating health, a terminal diagnosis and debilitating

treatment overshadowed the significance of a CUP diagnosis (‘I think the uncertainty

has been and gone…We were given some vague ideas as to where it started, but I

think we moved on very quickly from that.’ (C3 Husband)

Both patients and carers voiced concerns about treatment suitability (‘Well why do

they want to do radiotherapy if they haven’t found the cancer?’ (A3). Some also

perceived disagreements about treatment between professional carers or a lack of

consistent information regarding treatment, which heightened anxiety and frustration

(‘One [care professional] said that she [patient] wouldn’t need the radiotherapy

treatment,…but the other one said ‘Well yes she will’ (D2 Friend)).

However, patients and carers sometimes emphasised different concerns related to

the uncertainty of the primary site. The few patients whose condition appeared to be

in remission were particularly anxious about the potential for recurrence (‘an

unknown primary can come up anywhere, anytime. It’s like you’re waiting’ (B1).

Informal carers were more likely to express concerns regarding possible genetic

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predispositions to the primary ‘I’m very unsure as to whether it’s something that

might be hereditary’ (B4 Daughter).

Patients and carers also differed slightly in their information-seeking. In the majority

of cases patients sought information about their illness to overcome uncertainty and

take control of their condition, (whatever’s happening I want to know, don’t keep me

in the dark (B1)). Nevertheless, the ambiguity of information left other patients

unsure of their treatment options, preferring to place their faith solely in professional

carers, rather than seek further information themselves (‘I’ll listen to the doctors, I’ll

do as they say,…but I’m not researching anything’ (A8)). Informal carers, in contrast,

were more consistently assiduous in their search for answers and expressed greater

frustration at their lack (‘what do you mean you don’t know where it started? You’re a

doctor, of course you know where it [is].’ (A2 Friend)

The professional carers interviewed in this study also described how medical

uncertainty could be amplified in CUP. There is little clinical evidence on which to

base treatment decisions and prognoses (‘you can’t base it so clearly on clinical trial

data or stage data’ (A6 Oncologist)) compared with that available for known primary

treatments that were ‘much more certain’ (A1 Oncologist). Different bespoke

treatment approaches were described by oncologists, tailored to individual

circumstances, but it was acknowledged that ‘you really just don’t know what

evidence of benefit [the treatment] has’ (B1 Oncologist).

Several professional carers discussed how best to communicate uncertainty to CUP

patients, who ‘like doctors to be able to say ‘this is the problem, this is the solution’,

but are often left instead ‘with a feeling of uncertainty [which] is bound to…

undermine their confidence’ (A3 Oncologist). Professional carers recognised

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patients’ need to be kept informed, but acknowledged their difficulty comprehending

a CUP diagnosis and treatment options. They sometimes worried their own

uncertainty was conveyed to patients causing anxiety and distrust.

A particular issue arising from medical ambiguity surrounding CUP was the test or

treat dilemma: whether to start treatment based on the limited information available

or await further test results in the hope of determining the primary. Thereby delaying

treatment, possibly ‘while the patient is going downhill in front of you’ (A1

Oncologist). The impact of this dilemma was that: ‘sometimes people don’t get

treatment for quite a while because we’re spending so much time trying to work out

what the actual primary site is’ (A5 Oncologist).

Continuity of care

Continuity of care relates to the coordination, accountability and timeliness of care

over time and is facilitated or obstructed by how services are organised and

managed.14 Uncertainties involved with a CUP diagnosis made this group particularly

susceptible to disruptions in care continuity, especially when presenting symptoms

were vague or undefined. A lack of care continuity was also often associated with a

phenomenon described by some care professionals as MDT tennis: where patients

were ‘bounced’ between different MDTs in a way that could disrupt and delay care.

There were six discernible cases of this phenomenon in the sample. MDT tennis was

sometimes the product of coordination problems that arose from the boundaries that

delimit the work of MDTs, likened by one oncologist to ‘blinkers’ (A5 Oncologist).

Patients no longer considered as falling within an MDT’s remit could be referred,

sometimes repeatedly, to other MDTs (‘there are certainly situations where

somebody says ‘well it’s not lung, refer to GI’ and they say ‘well it’s not GI refer to

13

lung’ and somebody has to bite the bullet and take the patient.’ (A5 Oncologist)).

Described by one patient as ‘a bit of ping pong’ (B1), MDT tennis greatly increased

uncertainty amongst patients and carers, who felt left ‘in the middle’ (B1) and

‘abandoned’. (A6)

In some cases MDT tennis also appeared to be closely related to the test or treat

dilemma. Investigations could consequently be ‘rather protracted’ (A1 Oncologist),

with some patients ‘over-investigated’ (B2 Oncologist), especially those with vague

symptoms. Nevertheless, no patients objected to the number of investigations they

underwent, attributing symbolic as well as clinical value to extensive investigations

by demonstrating commitment amongst professional carers. Indeed, care

professionals were aware that some patients ‘want more stones turned’ (A5

Oncologist) to locate the primary, even when no clinical benefit would result.

Confusion regarding accountability of care often occurred when patients were

referred between MDTs, with CUP patients sometimes ‘perceived as a bit of a lost

tribe in that sometimes it’s not clear who is going to be responsible ’ (A6 Oncologist).

Among care professionals, the role of Clinical Nurse Specialists (CNSs) in particular

was considered important for both accountability and quality of care for CUP

patients, although access to a CNS usually required one specific MDT taking

responsibility for the patient (‘it’s all very tumour site specific so, if you’ve not got a

dedicated tumour site, you know, you don’t get the specialist nurse and all those

other things.’ (A6 Oncologist))

Some patients had access to a CNS throughout their hospital treatment journeys,

others lost contact with the CNS in one speciality when referred to another MDT,

while some patients were never allocated a CNS (‘I haven’t been allocated a specific

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nurse who is a specialist in that field. I understand that there are some cancers you

have a nurse who is a specialist.’ (C3)). Several professional carers believed the

potential introduction of a CUP specialist nurse would ‘make a massive difference’

(A1 Oncologist) to the accountability and quality of care for patients with CUP.

DISCUSSION

This study illustrates the distinctiveness of the CUP experience for patients and

carers, with difficulties often experienced as a result of a cancer diagnosis in general

frequently amplified in CUP. Uncertainty and disruptions in continuity of care were

important features of participants’ experiences and strong connections were found to

exist between them. When acting together, these features have the potential to

compound one another and lead to the phenomenon of MDT tennis. However,

evidence suggested effective continuity of care could mitigate participants’ feelings

of uncertainty.

The uncertainty of not knowing the primary site engendered anxiety and frustration

for some patients and informal carers, and exacerbated associated fears concerning

treatment effectiveness, prognosis, potential recurrence, and genetic predisposition.

For the patient, CUP is effectively a non-diagnosis and continued uncertainty can

have a devastating impact upon wellbeing.15,16 Although no information exists

concerning the effects of uncertainty on distress levels in this population, a ‘bad’

diagnosis may be less detrimental to wellbeing than one that is absent.17 Anxiety

increased for patients who detected uncertainty, indecision or disagreement amongst

professional carers, and care professionals knew this.

Issues of uncertainty led to dilemmas that challenged professionals caring for CUP

patients.18 One such issue was deciding what constitutes an optimal treatment plan.

15

Lack of published trial data,4 and the lack of primary staging data for CUP, could

leave professionals facing a test or treat dilemma – whether and when to cease

diagnostic testing or oncological treatment with curative intent.9 Communicating

uncertainty to patients was also an area of ambiguity for care professionals. .19

Providing a prognosis for a CUP patient is particularly challenging as care

professionals look to the primary as the main point of reference,8 so treatment

follows an empiric, varied and often ‘an educated guess’ approach.4 Disclosing poor

prognoses to patients while seeking to maintain their hope is one of the most difficult

tasks for professional carers,20 and reluctance to convey bad news is held in check

by the need to ensure patients have realistic expectations about treatment.21

Although no evidence was found for this in the present study, the reluctance of

professionals to engage in difficult conversations concerning cessation of testing

could potentially result in a default position of over-investigation, doing ‘just one more

test’, as the easiest short-term option for clinician, patient and informal carer.9

Many of the shortcomings of the health system appear to be magnified for CUP

patients leading to increased likelihood of disrupted patient journeys, characterised

by poor coordination and accountability, investigation and treatment delays. MDT

tennis was central to most disrupted patient journeys, which in some cases appeared

to be closely related to the test or treat dilemma. Since 2000 all cancer patients

within the UK should be formally reviewed by a specialist MDT to improve patient

outcomes,22 but MDTs have boundaries that potentially exclude patients with CUP.

Patients not deemed to come under the remit of one MDT, may be ‘bounced’ to

another team. Moreover, if not under the responsibility of an MDT, patients with CUP

may lack access to CNS support. The importance of the CNS role was particularly

emphasised by study participants, and has previously been acknowledged.23 It has

16

also been argued that continuity of clinical management is better facilitated when

patients and informal carers can develop enduring relationships with key

professional carers.24

Ultimately perhaps little can be done to overcome the uncertainty associated with

CUP, but more could be done to address issues regarding care continuity. In

England NICE recommended each NHS Trust establish a specialised CUP team

consisting minimally of one oncologist, palliative care physician and CNS, accessible

to patients once diagnosed with an unknown malignancy.2 If developed, these teams

could address issues related to MDT tennis and the need for a managed care

pathway for CUP patients. However, this will be a challenge for healthcare providers

given current economic constraints. Nevertheless, these findings should enhance

care professionals’ understanding of this group’s needs and enable locally

determined responses regarding: the most appropriate point of referral of CUP

patients to an MDT with experience of CUP; access to a CNS; and processes to

minimise the impact of MDT tennis.

Study limitations

The sample was not fully representative of CUP patients in terms of symptom

presentation, treatment pathways, age profiles, and survival rates.2 In part this is due

to CUP patients presenting with advanced disease, involving poor and rapidly

declining health status. Moreover, as clinicians decided whether patients were

sufficiently well and willing to participate in the study, they may have limited the

representativeness of the sample. Finally, many patients with an initial classification

of CUP will eventually have a primary diagnosed, and these individuals’ experiences

17

were not included in this study. Nevertheless, the purpose of the study was to inform

clinicians of the period of ambiguity prior to diagnosis.

CONCLUSION

Difficulties experienced by patients, their informal and professional carers following

any cancer diagnosis, are often amplified in CUP, making it a distinctive condition.

Short-comings in continuity of patient care are compounded by clinical uncertainties

associated with CUP, increasing the likelihood of disrupted patient journeys and

causing further anxiety for patients and their families. Central to much discontinuity is

the phenomenon of ‘MDT Tennis’, with patients being bounced between site-specific

MDTs whose remits often exclude CUP. Although uncertainties are likely to remain,

more could be done to develop managed care pathways and promote continuity of

care for CUP patients.

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Table 1: Interview coding tree

Categories Sub-categoriesDiagnosis Nature of problem

Interactions with professional carers, continuity and supportNews telling/ realisation processExplanation and framing of diagnosisCoping with emotions

Tests and investigations Investigation planSignificance, value and consequences of testingNumber/extent of investigationsUnderstanding of purpose and findingsContinuity and supportCoping with emotions

Treatment Treatment type and managementInteractions with professional carers, understanding, choice and confidenceTreatment outcomes, understandingSupport and coping

Living with CUP General circumstances/attitudeSymptomsTelling friends and familySupport and coping with emotions

22

Table 2 Demographic, clinical and interview details of patients

Gender Female: 10 patientsMale: 7 patients

Age Mean: 60.6 yearsMedian: 59 yearsRange 41 – 78 years

Time from diagnosis Mean: 13 monthsMedian: 6 monthsRange: 3 – 76 months

Site of metastases1 Lung (n=5 patients) Neck (n=5 patients) Liver (n=4 patients) Pelvis (n=3 patients) Lymph nodes (n=2 patients) Adrenal glands (n=2 patients) Spine (n=2 patients) (Pancreas, ovaries, mediastinum, appendix, mesentera, peritoneum)

(n=1 patient with each)

Treatment history Chemotherapy only (n=6 patients) Chemotherapy + radiotherapy (n=3 patients) Radiotherapy only (n=1 patient) Surgery, chemotherapy + radiotherapy (n=3 patients) Surgery + radiotherapy (n=3 patients) Surgery + chemotherapy (n=1 patient)

Recruitment source University Hospital Southampton NHS Foundation Trust (n=8 patients)

Portsmouth Hospitals NHS Trust (n=5 patients) Isle of Wight NHS Primary Care Trust (n=1 patient) Volunteered via CUP Foundation website (n=3 patients)

Informal carers (nominated by patients)2

Spouse (n=6) Sibling (n=1) Friend (n=3) Son/daughter (n=3) Parent (n=1)

Professional Carers (nominated by patients)3

Oncologist (n=5) Surgeon (n=2) Clinical Nurse Specialists (n=2) GP (n=2) Dietician (n=1) Radiographer (n=1)

Note:1. Several patients had metastatic disease in several sites.2. The carers of three patients declined to be interviewed.3. Several patients nominated the same professional carers to be interviewed as part of their case study.

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